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Patient and carer transition outcomes and experiences at the Westmead Centre for Adolescent and Young Adult Health, Westmead, Australia: protocol for a longitudinal cohort study.
Waller, Daniel; Steinbeck, Katharine; Zurynski, Yvonne; Ho, Jane; Towns, Susan; Milojevic, Jasmine; Milne, Bronwyn; Medlow, Sharon; De Queiroz Andrade, Ediane; Doyle, Frances L; Kohn, Michael.
Afiliación
  • Waller D; Transforming early Education and Child Health Research Centre (TeEACH), Western Sydney University, Westmead, New South Wales, Australia drdanwaller@gmail.com.
  • Steinbeck K; Academic Department of Adolescent Medicine, The Children's Hospital at Westmead Clinical School, Westmead, New South Wales, Australia.
  • Zurynski Y; Speciality of Child and Adolescent Health, Faculty of Health, The University of Sydney, Camperdown, New South Wales, Australia.
  • Ho J; Academic Department of Adolescent Medicine, The Children's Hospital at Westmead Clinical School, Westmead, New South Wales, Australia.
  • Towns S; Speciality of Child and Adolescent Health, Faculty of Health, The University of Sydney, Camperdown, New South Wales, Australia.
  • Milojevic J; Australian Institute of Health Innnovation, Macquarie University, North Ryde, New South Wales, Australia.
  • Milne B; The Children's Hospital at Westmead Clinical School, Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, Westmead, New South Wales, Australia.
  • Medlow S; The Children's Hospital at Westmead, Sydney Children's Hospitals Network, Sydney, New South Wales, Australia.
  • De Queiroz Andrade E; The Children's Hospital at Westmead Clinical School, Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, Westmead, New South Wales, Australia.
  • Doyle FL; The Department of Adolescent Medicine, Sydney Children's Hospitals Network, Westmead, New South Wales, Australia.
  • Kohn M; Centre for Research into Adolescent's Health (CRASH), Western Sydney Local Health District, Westmead, New South Wales, Australia.
BMJ Open ; 14(8): e080149, 2024 Aug 03.
Article en En | MEDLINE | ID: mdl-39097300
ABSTRACT

INTRODUCTION:

The Westmead Centre for Adolescent and Young Adult Health is a purpose-built facility supporting integrated care for young patients with a variety of long-term health conditions transitioning from paediatric services at the Children's Hospital at Westmead to adult services at Westmead Hospital, Australia. METHODS AND

ANALYSIS:

This protocol outlines a prospective, within-subjects, repeated-measures longitudinal cohort study to measure self-reported experiences and outcomes of patients (12-25 years) and carers accessing transition care at the Centre for Adolescent and Young Adult Health. Longitudinal self-report data will be collected using Research Electronic Data Capture surveys at the date of service entry (recruitment baseline), with follow-ups occurring at 6 months, 12 months, 18 months and after transfer to adult services. Surveys include validated demographic, general health and psychosocial questionnaires. Participant survey responses will be linked to routinely recorded data from hospital medical records. Hospital medical records data will be extracted for the 12 months prior to service entry up to 18 months post service entry. All young people accessing services at the Centre for Adolescent and Young Adult Health that meet inclusion criteria will be invited to join the study with research processes to be embedded into routine practices at the site. We expect a sample of approximately 225 patients with a minimum sample of 65 paired responses required to examine pre-post changes in patient distress. Data analysis will include standard descriptive statistics and paired-sample tests. Regression models and Kaplan-Meier method for time-to-event outcomes will be used to analyse data once sample size and test requirements are satisfied. ETHICS AND DISSEMINATION The study has ethics approval through the Sydney Children's Hospitals Network Human Research Ethics Committee (2021/ETH11125) and site-specific approvals from the Western Sydney Local Health District (2021/STE03184) and the Sydney Children's Hospitals Network (2039/STE00977). Patients under the age of 18 will require parental/carer consent to participate in the study. Patients over 18 years can provide informed consent for their participation in the research. Dissemination of research will occur through publication of peer-reviewed journal reports and conference presentations using aggregated data that precludes the identification of individuals. Through this work, we hope to develop a digital common that can be shared with other researchers and clinicians wanting to develop a standardised and shared approach to the measurement of patient outcomes and experiences in transition care.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Cuidadores / Transición a la Atención de Adultos Límite: Adolescent / Adult / Child / Female / Humans / Male País/Región como asunto: Oceania Idioma: En Revista: BMJ Open Año: 2024 Tipo del documento: Article País de afiliación: Australia Pais de publicación: Reino Unido
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Cuidadores / Transición a la Atención de Adultos Límite: Adolescent / Adult / Child / Female / Humans / Male País/Región como asunto: Oceania Idioma: En Revista: BMJ Open Año: 2024 Tipo del documento: Article País de afiliación: Australia Pais de publicación: Reino Unido